Antonia, from Eckington, Worcestershire, is in constant pain and has been left permanently bedbound

She said: “This is no life for a 20-year-old. Tonia has so much to give the world.

“I am begging everyone to give anything they can, no matter how small, to help Tonia have the life-saving surgery she needs.”

Antonia’s condition is now so advanced that without the surgery, which isn’t funded on the NHS, her symptoms will become so severe the progressively weakened ligaments in her neck could no longer support her head - with fatal consequences.

Each time Antonia’s neck dislocates it puts more pressure on her brain stem, which is causing seizures and respiratory arrest.

Her symptoms will initially lead to paralysis, organ failure and any fall could cause her neck to snap.

Antonia’s desperate mum Victoria, 48, who gave up her job as a teacher to care for her daughter, said: “This is our final hope to save Antonia. She has suffered for six years and fought so hard.

“But there is nothing more anyone can do. Without this surgery I will lose my daughter. And I just can’t bear the thought of that.

Each time Antonia’s neck dislocates it puts more pressure on her brain stem, which is causing seizures and respiratory arrest

“I can’t give up – no matter how old, Antonia is still my little girl. As her mum, I will do everything I can to help her.”

The complex surgery in Barcelona, Spain, which will fuse the upper part of Antonia’s vertebrae together to stabilise her neck, is booked for April 12, but funds need to be raised prior to that for the operation to go ahead. Up to now, the family has raised just over £10,000.

Victoria, a single mum, added: “Due to how critically ill Antonia is, she needs to be flown out to Spain via air ambulance and we will need to be there for a month.

“All of this costs a lot of money and it is cash we simply don’t have. My daughter has always worked so hard to help others, including raising £400,000 for children who needed wheelchairs, but now she needs to ask for help herself.”

There are several types of EDS that may share some symptoms, including an increased range of joint movement, stretchy skin and fragile skin that breaks or bruises easily.

The different types of EDS are caused by faults in certain genes that make connective tissue weaker.

Depending on the type of EDS, the faulty gene may have been inherited from one parent, or both parents. Sometimes the faulty gene isn't inherited, but occurs in the person for the first time.

Kay Julier, managing director of Elhers-Danlos Support UK, said: “There are 13 types of EDS and most are very rare. It is thought to affect one in 5,000 people, but our belief is this is an under-estimation as often so many sufferers go misdiagnosed.”

He said: “The operations have been carried out in Europe and America but sadly not always in research settings where all the evidence could be collated and standardised. Until we have this it would be very difficult for the NHS to approve the surgery.”

“What touched my heart is that Tonia trained to be a dancer, and dancing was her dream, but since being struck with her illnesses, her life’s dream was not to be.

“Tonia has fought so hard, her determination and strength is astounding - even starting a charity to help others like her.

“Now Tonia has reached a point where her symptoms are so terrible and cause her so much pain that she can longer help others and struggles just to get through the days.”

Antonia, who also suffers from gastrointestinal failure and postural orthostatic tachycardia syndrome (POTS), cannot even eat normally and suffers from frequent seizures, is now permanently bed bound. The slightest movement can cause her neck to dislocate.